Woman takes on ‘big head’ condition by the horns

Alone, with a sick baby, living in an incomplete house without windows and doors, Patience Mbabazi woke up one morning in September 2011 to find that a huge snake had claimed a corner of her bedroom. On a fairer day, it would have been stray cats seeking shelter from the rain.
Such was the desperation she had been reduced to, five months after giving birth to a child with hydrocephalus.
“I gave birth to Isaiah, my second child, normally on May 19, 2011 in Bulombe Health Center III in Rukungiri District. He had a big, soft head and weighed 4.9 kilogrammes. He also cried a lot.”

Mbabazi is soft-spoken and as she narrates her story, her eyes tear. The way she maintains direct eye contact during the interview, even when she is thinking aloud, is eerie. It is a characteristic of people who have gone through extreme emotional pain.
On the other hand, after an initial uncertainty about our reaction to him, Isaiah is playful, running around Word of Life Church in Mpala, on Entebbe Road without care.
Raw scar tissue covers his left leg. He often gets convulsions and recently, he fell on a charcoal stove.

Breakthrough

At three months, Isaiah weighed 15 kgs. When his grandmother consulted her friends, she was told the condition was treatable. She counselled her daughter-in-law and fundraised Shs150,000 for the initial treatment at Cure Children’s hospital in Mbale District.
“I thought Isaiah would be the only child with hydrocephalus at the hospital. Instead, I met 80 mothers with babies who looked like mine. That was my first encouragement.”

When the first operation (Endoscopic Third Ventriculostomy) failed, her in-laws said the baby was too expensive. Because they were being taken care of by her in-laws, it was not easy for Mbabazi and her husband to eat, with the sharp words ringing in their ears.
Her husband left home to look for work to support the family, and the first child was taken away by the grandmother.

Back in Mbale, the doctors told her that they would have to extract cerebrospinal fluid from Isaiah’s back.
“The women told me my baby would die. But I was ready for anything. He was in so much pain that I wanted him to rest. I could not face my in-laws if the operation failed.”
Mbabazi was not alone in desiring her son’s death. Some women had not breastfed their babies for a week, hoping that they would die of hunger. Some wanted to ask for pills to kill the babies. They were scared of returning home to discrimination.

Seeking answers

“The midwife said it was normal for a baby to cry,” says the 31-year-old. “My relatives were in shock at what I had given birth to. They said I had brought setaani wa’Abaganda mu Nkole.”
She went to Ruhinda Health Centre III to ask why her baby’s soft spot was not moving. The doctor advised her to buy an electric gadget to make the head harder. It cost Shs 750,000, which Mbabazi did not have.

“My parents told me to take the child away. I returned home to Lyamutundwe (on Entebbe Road) but when my in-laws saw Isaiah, they said that head did not belong in their family.”
Enduring abuse from family and neighbours, Mbabazi felt she was to blame for giving birth to Isaiah. His grandmother bathed him in a herbal birth, trying to press the head down, but instead it grew bigger.

“When he made a month, I took him for immunisation at Wagagai Health Center. He weighed nine kilogrammes. The paediatrician said he had water in his head. I had never heard of such a thing.”
As the doctor explained further, Mbabazi broke down.
“I hid the referral letter and prayed. After a week, I put it on the bed and my husband found it.”
He told his mother, who in turn blamed the daughter-in-law. The couple was unemployed, without money to take the child to CURE Children’s Hospital of Uganda, in Mbale District, where he had been referred for treatment.

Turning point
The operation lasted 12 hours and a tube was implanted in Isaiah’s brain to drain the fluid.
“I thought he was dead. His head was much smaller and so spongy. I started crying; all I could think about were the people who told me I had given birth to Satan.”
The doctors counselled her and taught her how to bathe him so that the tube would not get blocked or infected.
Relatives called to tell her she was a failure. Mbabazi realised that these people did not understand her son’s condition.

“For us to fit in the community, I needed to create awareness about hydrocephalus. My child was sickly; in fact, he fell sick five times a month, until he was three. He had fever, diarrhoea, and convulsions. A treatment session would cost Shs 200,000.”
Today, the scars of the stigmatisation are visible. Isaiah fears other children and does not freely interact with them. At four years, before he leaves home, he picks up his red knit cap to cover his head, to avoid stares.
“When he sees children coming from the opposite direction, he begs me to turn back, to avoid their laughter.”

Understanding hydrocephalus
Hydrocephalus is a condition where there is an abnormal buildup of cerebrospinal fluid in the brain. This fluid is supposed to cushion the brain, but when it becomes too much, it puts pressure on the brain.
Dr Stewart Wamukango, a senior medical clinical officer at CURE Hospital says hydrocephalus is rarely genetically transmitted.

“Only a small percentage has Congenital Hydrocephalus. With this kind, the mother is diagnosed during the antenatal stage, and birth is by C-section. The majority of patients, though, have Post Infectious Hydrocephalus (PIH).
With PIH, a baby is born normally but gets the condition due to infections during and after delivery, and meningitis.

“I have known mothers who wash the umbilical cord with cow dung,” says Dr Wamukango. “Germs from the dung enter the blood stream and affect the brain. In a day we can operate seven babies and out of these, five have PIH.”
Sometimes, PIH is caused by Spina Bifida, where the baby is born with a wound along the lower spinal cord. When feaces enter the wound, the germs are carried through the cerebrospinal fluid to the brain.

Challenges
Money for physiotherapy and treatment is scarce.
“When we go to Entebbe or Mulago hospitals, they tell us to take the children to CURE Hospital, yet Mbale is far,” says Mbabazi. “Our children need physiotherapy twice a week but the nurses fear to touch them because their necks are weak.”

The first two pioneers of the group lost their children. One died from an infection – the group did not have the funds to pay for his treatment.
“The other child, who received a wheelchair, was poisoned by his ssenga (paternal aunt). She said he was useless to the clan.”
Mbabazi also says the medication for convulsions is scarce. Some children are on permanent medication, with up to 10 convulsions a day.

Advice to mothers
“Once you accept the situation, the love and compassion for your child will come. When the pain becomes too much, find other women with similar children, to share experiences and encourage each other.”

Convulsions

Not all patients suffer convulsions.
“It depends on the extent of the damage to the brain,” says Dr Wamukango. “If the child gets early treatment, the essential parts of the brain may not be affected.”

Living normally
If operated on early, the head can be reduced so that it will grow at normal rate.
“As long as the fontanelle (baby soft spot) is not closed, the head can keep on expanding.”
According to Dr Wamukango, PIH is preventable, but is on the rise because the community does not know the causes.
“People blame the parents and the baby and many families break. As a hospital, we are moving across the country to sensitise communities and opening forums for parents with hydrocephalus children.”

Hydrocephalus and Spina Bifida Initiative
When her son was five months old, Mbabazi boarded a taxi from Entebbe hospital. He was crying and vomiting uncontrollably.

“The passengers began complaining about the noise. After a short while, they told the driver to choose between them and myself. He told me to get out.”
From that day, Mbabazi began talking to people who stared at her child, telling them about hydrocephalus. Soon, neighbours who used to point fingers at her and laugh stopped.

“In November 2011, I formed the Initiative and travelled to churches with Isaiah to highlight the condition. Talking about it also healed me, because I stopped blaming myself for Isaiah’s illness. I became bolder, looking for mothers with children like mine.”
She found two. One had hidden her child, in the dark, for two years, feeding him only on dry tea to speed up his death.

The child could not walk, see or talk, and hunger had made him eat his upper lip.
“I took her to a church I was visiting. They fundraised for her to take the child to CURE, and bought for him a wheelchair. Within a month his health improved.”
More mothers, including those with children suffering from spina bifida, joined and today the Initiative has 22 members. Housed in Word of Life Church in Mpala, on Entebbe Road, the Initiative only covers Wakiso District.
As a way of raising money, the women plan to make liquid soap and shampoo for sale.

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